How long till the dripping tap causes the bucket to overflow?

[LemonZest11]

I’ve been going pretty well on my three weekly TCZ injections and have managed to get down to 0.5mgs pred after a couple of hiccups … it’s taken over 2 years to get here. I remained on 0.75mgs for 3 weeks, timed with TCZ dose, but now I’m really nervous about the next drop. I feel fine, should I drop to 0.25mgs at 3 weeks (now), or leave it for another 3 weeks, just to be sure. Just don’t want to risk it at this very low dose, feeling a bit scared. It feels as though pred and I have become partners in crime, I may have developed Stockholm Syndrome. 😂

[DorsetLady PMRGCAuk volunteer]

Your question is much like the perennial “how long is a piece of string”…and probably as unanswerable.

But if you are dithering about reducing at the moment -then give it another 3 weeks ….. at such low doses it’s sometimes a mind over matter thing as much as disease activity.

What’s 3 weeks between friends (or partners in crime!) 😊

[LemonZest11 in reply to DorsetLady]

Agreed. Thank you.

[PMRpro Ambassador]

I agree totally with DorsetLady!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Course you do guv!😆

[PMRpro Ambassador in reply to DorsetLady]

I knows my place ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😇

[LemonZest11 in reply to DorsetLady]

Well you two got me into this!!!

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

😊

[SnazzyD]

Took me a year to go from 1mg to zero! I suspect it was 70% psychological but hey. Three weeks isn’t long really in my book. What’s the rush? It’s not like you are on a significant dose regards side effects and if flare was in the offing that bypasses TCZ I don’t think under 1mg will hold back the tide, but I’m just surmising because essentially nobody can say really.

[LemonZest11 in reply to SnazzyD]

Yep, thank you. Patience at this late stage. Can’t believe I will ever be off pred.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

You will....

[Sharitone]

I'm assuming you are cutting 1mg tablets in quarters and halves? If reducing is a worry, could you add an intermediate stage, shaving just a few more crumbs off so that you end up taking something like 0.4mg? Would that make it easier to countenance? It's the sort of thing I do!

Btw, congrats on getting so low, and TCZ only every 3 weeks too!

[LemonZest11]

Thanks Sharitone, it's been quite the journey. Yes, I cut 1mg pills into quarters. It's so hard to believe such a small amount can have an impact, since I began 4 years ago on 20mgs. 3 weekly tcz is due to neutropenia. If I attempt to stretch the dose any further, even just a couple of days, I have flared in the past. As I have said before, it's a fine balancing act but I have never gone below 0.5mgs pred before, hence my hesitation.